Follow-up...

Tyler had his echocardiogram with Dr. Garmany. She didn't see any change. His Shortening Fraction at the part of the heart that she measured was 23-25%. He was in a little less fiesty mood today so she was able to get the shots she wanted. We don't see her again for three months.

Tyler had his photoshoot with the Littlest Heroes Project yesterday. The Littlest Heroes Project is a nonprofit organization made up of professional photographers nationwide who provide free photo sessions to our nations littlest heroes. "This is our way of giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses." Founder Felicia Reinhard wanted to find a way to let them know that they are heroes to many, and to share their inspirational stories and photos with the world.

A wonderful photographer with Ampd Photography took the shots. We spent almost two hours at Coonskin park taking various shots. He's a wiggleworm but Donna got some good shots. I'm super excited to see the finished pictures. I know there is one of Colin, Tyler, and myself that is really good. It's hard to get all three of us to hold still for a good pic at times:) I'm assuming some of his pictures will go onto the Littlest Heroes website. It's a great organization, so check it out. http://www.littlestheroesproject.org

Back to the Doc..

Tyler saw Dr. Garmany today for a check-up. She increased all of his meds with his weight. He wasn't too happy to be there today so it's a good thing he didn't have his echo today. He seems to be fascinated by light switches these days, so all he wanted to do was grab at the light switch in the room:) We go back next week for an echo.

Dr. Jones thinks he should be seen by an ENT to evaluate the need for ear tubes. This worries me a bit considering he'd have general anesthia. Dr. Garmany said it was fine to do but she would be surprised if we didn't have a hard time finding a dr. in Charleston that would do it considering his heart condition. She said he'll probably end up being addmitted to Pittsburgh Children's Hospital to have it done. **sigh, another trip to Pittsburgh.

On a lighter note, he's really a lot of fun right now when he is in a good mood. He has the biggest grin and is as rotten as all get out! He and Colin feed off of each other with the rotten-ness:)

Back to Pittsburgh...

We started our trip to Pittsburgh Children's Hospital at 8 am and what a day it was! We didn't get home until 7 pm and the only place we stopped other than the hospital was KFC for dinner. Poor Tyler! It's such a long day for him. We arrived at the hospital at noon and didn't leave until 3pm!

Dr. Miller said there was no changes to his heart and she was pleased with that. Mommy was a bit disappointed but I'm trying to convince myself to be happy with it. I wanted to see an increase in his heart function, but Dr. Miller said it could be years before we see any improvement in his heart. His function was at 37% today. No leaky valves. No increase or decrease in size. She is strongly leaning towards him NOT having the left ventricular non compaction. We wouldn't know for sure without doing testing which really wouldn't change the treatment, so we'll skip putting him through the testing.

I still can't believe all of this has happened and it is from an illness he got at such a young age. But I try to tell myself that this is the path God wants me to go down and it's brought me closer to him and showed me how strong I can be. And I need to trust that he will take care of Tyler and that Tyler has a much bigger purpose in life than I can ever imagine.